When my father was dying, I had a hospital oncologist who told me he was too busy to talk to me.
My brother has been diagnosed with Alzheimer’s. What support is given to his wife?
I have a seriously ill friend who has had long term COVID and now leukemia. She had been told she needed basic equipment. She is exhausted. She lives alone. Instead of reassuring him, they question what he says and leave him to fend for himself.
Science is not static. With a relatively new disease like COVID, the science is changing. Caregivers are learning as they go. But, young or old, the diagnosis is placed on a person living in the family. Care science is, in some ways, the smallest part of the solution. Healthcare is about living, breathing human beings before it is about the science of a disease.
Senator Susan Collins sits down in commission who is listening to a bill (S.3726) that includes money to provide education on the changing science of COVID and the emerging field of its long-term side effects. Maybe she could add funding for caregivers to be educated on how to be humanitarian caregivers and push it.
Health care providers are first trained as scientists. They must first be trained as humanitarians: perhaps a whole semester on how to listen and follow. Yes, providers are busy. I do not care. It’s my life and my family’s life that are on the line.
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